People who don’t tell anyone else their HIV status have as good health outcomes as other people living with HIV

Roger Pebody

Published: 01 May 2015

A large survey of people attending HIV clinics in the UK has
found that those individuals who chose not to disclose their HIV status to
other people were no more likely to suffer from depression or anxiety, to have
difficulty adhering to antiretroviral therapy or to have worse HIV outcomes,
the British HIV Association conference in Brighton, UK, was told last week.

Although it’s often taken for granted that being able to
talk about your HIV status is an essential part of living well with HIV, there
are few data to demonstrate this.

The ASTRA (Antiretrovirals, Sexual Transmission Risk and
Attitudes) cohort recruited 3258 participants at eight English HIV clinics in 2011 to 2012. The
data presented at the conference considered disclosure to a stable partner,
family, friends and work colleagues. Talking about HIV with casual partners was
not covered.

For each group of people, respondents were asked if they had
disclosed to nobody, to some people, or to most or all of the group. A significant minority had not talked
about their HIV status with anyone at all.

Among gay men living
with HIV, 5% had not disclosed to anyone at all. Moreover, for each group of
social contacts, significant numbers of gay men did not reveal their HIV status
to anyone in that group – 40% did not disclose to any family, 14% did not disclose
to any friends, 54% to work colleagues and 5% to their stable partner.

Gay men’s disclosure was greatest to friends – 56% disclosed
to some friends and 30% to most or all of them. While over a quarter were open with most of their family members, the 40% who did not disclose to any family members was
higher than in heterosexual people.

Among women
living with HIV, 16% had disclosed to no-one. Again, significant numbers did
not talk about HIV with anyone in a particular social group – 33% did not talk
to family, 42% to any friends, 84% to any work colleagues and 13% to their
stable partner.

Women disclosed the most to family – 47% disclosed to some
and 20% to most family members. Very few women disclosed at work.

The picture for heterosexual
men was broadly similar to that for women, with 17% not disclosing to
anyone at all. However, a larger number of men (56%) had not disclosed to any
friends at all.

Across all groups, individuals who had been diagnosed for a
shorter period of time, black people and older people were less likely to
disclose their HIV status. Gay men who belonged to an organised religion were
less likely to disclose.

But does non-disclosure matter? Is it associated with poorer
health outcomes? While a quantitative survey, completed on a single occasion by
respondents, has some limitations in terms of the insight it can give into the
quality of people’s lives and relationships, these data are reassuring.

Mental health difficulties and adherence problems were quite
common among survey respondents. But they weren’t more frequently reported by
people who hadn’t disclosed to anyone. After statistical adjustment for other
factors that could skew the results, rates of the following were very similar
in people who disclosed and people who did not:

Low social support.

Symptoms of depression.

Symptoms of anxiety.

Problems with adherence to HIV treatment.

A detectable viral load.

In fact, some of the data suggested that having disclosed to
most or all friends and family was actually associated with poorer outcomes in gay men. A
more selective disclosure strategy was associated with better outcomes.

Marina Daskalopoulou concluded that non-disclosure appears
to be a way of coping “which is not necessarily linked to poor mental health or
difficulty managing treatment.”

References

Daskalopoulou M et al. Non-disclosure of HIV serostatus and
associations with psychological factors, ART non-adherence, and viral load non-suppression
among people living with HIV in the UK. BHIVA conference, Wednesday 22 April
2015, abstract O3. (Presentation
slides available here.)

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

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checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member
of your healthcare team for advice tailored to your situation.